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-   -   LDN Information & Check-in 2 (https://www.neurotalk.org/multiple-sclerosis/71392-ldn-information-check-2-a.html)

SallyC 03-17-2009 01:03 PM

Wow, Marion, I am so excited for you and for all of us on LDN....WoooooHooooo!!:D

Kitty 03-17-2009 01:40 PM

That's great news, Marion. Sorry the PA wasn't as excited as she should have been.....:rolleyes: Just sour grapes, I think, because we're proving them wrong every day! :cool:

I'm 95% better than I was just a week ago. I have to believe that the LDN makes it easier for me to get over these episodes quicker than I was on the Interferon's. I've been taking Prednisone, too, and that has definitely helped.

I'm excited to see what your MRI says. Let us know the results once you get them. :hug:

Lady 03-18-2009 12:26 AM

Marion that is great news. The fact that you don't feel well, and yet you did much better on the “gate analysis”. Good for you. :) Your balance is better too.

My Neuro noticed an improvement in my exam, walk and balance also. It must be the LDN. She has my PCP Rx it. She says she can only Rx approved MS DMD's. :rolleyes:

She doesn't have the fancy walk pad like your does. That sounds like a great diagnostic tool for a Neurologist to have. They can see improvement, decline, and foot and leg problems. Sounds very scientific. Computers are amazing what they can do nowadays.
I hope you feel better.

SallyC 03-20-2009 10:29 AM

It looks like, no news is good news, here. I am doing jim dandy, with the help of God and my LDN today.

How are you all doing?:grouphug:

Kitty 03-21-2009 09:28 AM

I'm doing real good, Sally. Still a little off-balance but my legs are 99% better than they were last week. Hard for me to believe that seven days of oral Prednisone could do that but maybe the LDN and Prednisone together make a good team! :)

It's a beautiful day here today......cool and sunny and it's SPRING!! My neighbor's Tulip Tree and Japanese Cherry Tree are blooming up a storm and so beautiful. There's bumble bee's buzzing around my window and my cats are "talking" to the birds. Hope it's as nice in other parts of the country.

marion06095 03-21-2009 01:01 PM

Pretty darned well
 
I’m doing pretty darned well. The Transverse Myelitis is still with me, and the burning in my hips/thighs is a nusance, and nothing more. The bladder weakness, on the other hand, is still a bit unnerving. I’ve been back with the LDN for several weeks now, and I am still hoping for some relief from the TM.

Spring is one of my very favorite times of year, and I feel certain that with the warming weather, I’ll be able to build up some strength.

LarryLDN 03-21-2009 07:26 PM

"Gait analysis"

http://en.wikipedia.org/wiki/Gait_analysis

Judy2 03-22-2009 11:09 PM

It's great hearing of all the good results with LDN!! Still holding steady here -- now I'm praying for something to take away this Central Pain. Nice seeing you post, Larry. It's been awhile! :)

LarryLDN 03-23-2009 06:13 AM

My computer crashed a few weeks ago, just getting my new one working. Been a long winter :grouphug:

SallyC 03-23-2009 09:33 AM

Glad to hear that you have everything back in working order..:D How's your Dad?

Welcome home..:hug:

FluteMaker 03-23-2009 11:07 PM

well folks the flute guy is back.new computer and all.
bestbuy has fairly healthy compaq laptops for some reasonable prices right now.theyve got one model with 160gig hard drive for 400$ and the one i got with a 250gig hard drive for 450$.....wireless ready,vista premiumand plenty of other stuff in the box for my cats to mess with.



other than that,the LDN is holding steady for me.i got called a liar the other day at the dentist office.they couldnt believe that just about 8months ago i was on a walker.seems kind hard for me to believe myself,but it was just 8 months ago i even needed to scoot down stairs on my backside.
for once in my life i get to be the person on the tv commercial with the caption 'results not typical' printed across my waist

LarryLDN 03-23-2009 11:56 PM

Quote:

Originally Posted by SallyC (Post 485358)
Glad to hear that you have everything back in working order..:D How's your Dad?

Welcome home..:hug:

getting there.

My dad's doing okay, his kidney EGFR levels dropped from the bad/low 31 down to 26, but my sister told me it's back up to 31 again.

I'm thinking of going there for a few days next month, not sure if I can yet though; I'll find out this week



Quote:

Originally Posted by FluteMaker (Post 485675)
well folks the flute guy is back.new computer and all.
bestbuy has fairly healthy compaq laptops for some reasonable prices right now.theyve got one model with 160gig hard drive for 400$ and the one i got with a 250gig hard drive for 450$.....wireless ready,vista premiumand plenty of other stuff in the box for my cats to mess with.

That's where I got mine. cute LITTLE HP S3700Y, it was light enough for me to carry.

Desinie 03-25-2009 01:43 AM

Been on 3 mg of LDN for 2 months now. Not noticing much of anything in improvements. It's hard for me to tell. I've had more spasticity than normal though since starting. I need to re-order more. Wondering if I should try 4.5 mg since that's the optimum dose? What do you all think? I could get a script for 1.5 mg caps, which is what I wanted my neuro to order in the first place, but he was being difficult.

Twinkletoes 03-25-2009 10:30 AM

Aaaacccckkk! Those Dreams!
 
I've been taking 4.5 mg. of LDN since August.

My abilities have remained the same, but the numbness has spread. I manage to sleep pretty good at night, with only a couple of brief wake-ups.

But its the Dreams that keep me from getting a good night's sleep!

A couple of nights ago my sons and I were preparing to be thrown into jail for a wrongdoing. One son had three oversized, stained teeth in front, and needed to go to the dentist because one of them was decayed.

Last night I dreamed a work crew was coming to stucco my house. Meanwhile, I was using a walker and was dying of cancer. I was okay with it, though, but my daughter was horrible to me! :eek:

*sigh

At least I had all my clothes on, lol! :D

FluteMaker 03-25-2009 12:35 PM

Quote:

Originally Posted by Twinkletoes (Post 486432)
I've been taking 4.5 mg. of LDN since August.

My abilities have remained the same, but the numbness has spread. I manage to sleep pretty good at night, with only a couple of brief wake-ups.

But its the Dreams that keep me from getting a good night's sleep!

A couple of nights ago my sons and I were preparing to be thrown into jail for a wrongdoing. One son had three oversized, stained teeth in front, and needed to go to the dentist because one of them was decayed.

Last night I dreamed a work crew was coming to stucco my house. Meanwhile, I was using a walker and was dying of cancer. I was okay with it, though, but my daughter was horrible to me! :eek:

*sigh

At least I had all my clothes on, lol! :D

i never really had any issues wth the dreams, i almost kind feel cheated on that one. i only chad one bizzar dream.thats it just the one. i started at the 1.5mg for the first week. i was planning to do the first month at 1.5mg but i got antsy and went up to the 3mg early.after about a month at 3mg i went up to the 4.5mg and stayed there for about a month. just for kicks and giggles i went back down to 3.0 just to see if there was going to be any real noticable difference and there sure was. my legs got real tight,hamstrings would cramp up on me very easily and my balance deteriated. so, i went back to the 4.5 and thats where ive been since. im certainly not 100% but when i think back to the time i was speaking to the director of the shelter i work at. she saked how bad my left arm was and i took the sleeve of the shirt i was wearing and slammed my arm on her desk a few times. she cringed,but i didnt feel a thing. back then the arm was just kind of hanging there.
and here it is,not even a year later and im working on getting back in school to start training for a new career.

SallyC 03-25-2009 12:53 PM

Quote:

Originally Posted by Desinie (Post 486267)
Been on 3 mg of LDN for 2 months now. Not noticing much of anything in improvements. It's hard for me to tell. I've had more spasticity than normal though since starting. I need to re-order more. Wondering if I should try 4.5 mg since that's the optimum dose? What do you all think? I could get a script for 1.5 mg caps, which is what I wanted my neuro to order in the first place, but he was being difficult.

Sure, you could try it. You can always go back down, if it's too much too soon.

Good luck..:hug:

SallyC 03-25-2009 01:00 PM

Twink, I still have some vivid dreams..:eek: I assume it's the LDN.. They do wake me up but I usually go right back to sleep.

I don't ever sleep through the night, though. I usually wake up every 3 to 4 hrs and then, of course, have to go potty..:mad:

I hope you sleep well tonight..:hug:

Lady 03-26-2009 11:32 PM

Hi everyone,
Checking in.
I am still on 3.0 mg. I get tempted to increase the dosage but will wait just a bit longer. I dream vividly every night in color. I, like Sally, wake up for the potty. Otherwise, I would have the potty dream, looking for a bathroom and find none suitable, in the dream that is. :)

I found the capsules that Skip's puts the LDN in (1.5 mg each) does not dissolve well for me, so I wasn't getting the full benefit at the right time. Every night I open each 1.5 mg Capsule stir the powered drug on to a large tablespoon of apple sauce, pudding, ice cream, etc. Then I do the same with the other 1.5 mg. I follow this with a glass of water.

I lick the spoon well to get all the drug. It is such a small amount of LDN and mostly filler. I don't put it in water because I don't know how much sticks to the glass. I can't lick the glass clean. :D This is how I do it.

I still feel I am getting benefit from the LDN. I find it to have pain relieving properties too. My DH noticed how my balance and drunken walk has improved, and I seem to have more energy. I am on LDN for almost 3 1/2 months.

After I get my blood work done in three months from now, I will increase the dosage. I have two other doctors to see before that, for other medical issues I have, with other specialists. I am still happy with the LDN. :)
:grouphug:

Natalie8 03-27-2009 02:14 PM

Hi LDN folks,

I have some questions I'm hoping someone can answer. My mother has MS and her neurologist on the east coast is willing to try LDN and write the prescription I guess. What does my mother have to do next? Isn't there a compounding pharmacy somewhere that everyone goes to? How much do you start with? What do you go up to?

Thanks!

SallyC 03-28-2009 10:22 AM

Hi Nat, All your questions are answered somewhere in this lengthy thread..LOL.

Just have your Mother call Skips Pharmacy in Fla and set up a payment/delivery schedule with them and have her Doc fax the script to Skips. If your Mother is very Med sensitive, then she should start at 1.5mgs and go up to 3mg in a couple of weeks and then up to 4.5 mgs in another couple of weeks. If 4.5 mgs cause more spasticity then go back down to 3mg and stay there for awhile.

I started on 3mg and stayed there for 2 years and now, I'm on 4.5mg for the last 4 years.

Let me know, if I may be of any further help.

:hug:

Natalie8 03-29-2009 01:35 PM

thanks Sally for the quick summary! I just didn't have time to go through the thread right now -- too busy at work! :) I will let my Mom know.

Kitty 03-29-2009 02:35 PM

Just this past week I have been having some vivid dreams. Not really bad....just very vivid and very "busy". I don't think I have MS in my dreams because I'm doing things I can't normally do....like run. :rolleyes:

Lady 03-29-2009 11:56 PM

Kitty I find that I am fine in my dreams also. Wishful dreaming? :) I do a lot of cleaning, of others family members and friends messes, in my dreams. That is the most popular one. :D

I thought they say when you dream you are in REM sleep, a deep sleep. If that is so, then it must be a good thing, I think. What I do find odd, is that I can get up, go to the BR, then go right back to sleep and continue the same sort of dream with the same people in it. I wonder how that happens? :confused:

Natalie, I hope that your Mom gets the LDN and that it works wonders for her.:)

Kitty 03-30-2009 04:59 AM

I don't mind the dreams.....it's the only excitement this girl ever gets!! I just wish I could figure out how to make George Clooney or Johnny Depp stop by for a visit! :D

SallyC 03-30-2009 11:03 AM

Quote:

Originally Posted by Kitty (Post 488606)
I don't mind the dreams.....it's the only excitement this girl ever gets!! I just wish I could figure out how to make George Clooney or Johnny Depp stop by for a visit! :D

Did you look in my bathroom, lately? I believe JD is still there, waiting for me..LOL

I had a dream the other night that DD was taking over my life..:eek: Very Skeeeeery... Maybe because she brought me some of those new fangles energy saving light bulbs, that I didn't ask for and didn't want..:mad:

marion06095 03-31-2009 09:40 AM

The results of my most recent MRI have come in. No change in the past year. I am, of course, very pleased. Of course, my lesion count is the same – too many to count – but I’ll take the good news in the spirit in which it was given. :):):)

PunkDizzle 03-31-2009 08:39 PM

my update.. i wish i could remember when i started LDN i think it was around 5-6 months ago.. ya know i wrote it down cuz i knew i would forget ... so what do i do.... lose the paper it was written on :rolleyes:

anyway things have been going fine with LDN i moved up to 4.5mg at some point (cant remember but it was just a little bit ago) and the only diff. i noticed is i have a hard time staying asleep.. but that happened at first on the 3mg for probably a good 2 weeks maybe a tad longer.... so ill stick with the 4.5mg as long as i don't get any crazy side effects if there even are any...

i do think i need a different filler though.. i have been getting lactose but i am lactose intolerant.. thought i could get away with it in such a small amount...but nope..
why can't they just use powdered sugar as a filler i know i don't have a problem with that. lol :)

thats my update..

SallyC 03-31-2009 09:48 PM

Does this help, Punk?

http://neurotalk.psychcentral.com/post376417-408.html

:hug:

PunkDizzle 04-01-2009 12:12 AM

Quote:

Originally Posted by SallyC (Post 489377)


ha! it does actually! thanks :)

Bearygood 04-04-2009 10:04 AM

Hey, did you guys see this? Sorry if it's already been mentioned but I just stumbled upon it when I was trying to look for something for Erin. If you click on Multiple Sclerosis, you'll see people who have cited their experience with LDN. Some of you might want to add your own experience:

http://www.ldndatabase.com/

Kitty 04-04-2009 10:23 AM

Quote:

Originally Posted by Bearygood (Post 491141)
Hey, did you guys see this? Sorry if it's already been mentioned but I just stumbled upon it when I was trying to look for something for Erin. If you click on Multiple Sclerosis, you'll see people who have cited their experience with LDN. Some of you might want to add your own experience:

http://www.ldndatabase.com/


Thank you so much for this, Beary! It's amazing all the positive feedback given by LDN users. :)

Bearygood 04-04-2009 10:27 AM

Quote:

Originally Posted by Kitty (Post 491148)
Thank you so much for this, Beary! It's amazing all the positive feedback given by LDN users. :)

I know it's not universal that everyone has had good experiences but that's the same with any drug and I agree that the results are impressive. If I do go on medication at some point, this is what I'd try first. :)

Kitty 04-04-2009 11:49 AM

The nice thing about LDN is that it helps so many different diseases. I'm wondering if it will help prevent cancer from ever forming in those who are taking it for another reason like MS?

SallyC 04-04-2009 12:34 PM

Dr Bahari and his wife take it as a cancer preventative!!!

Kitty 04-04-2009 02:39 PM

Quote:

Originally Posted by SallyC (Post 491214)
Dr Bahari and his wife take it as a cancer preventative!!!


It can't hurt......might help! I really wish more people would give it a try.

My neighbor with ALS has gotten an rx for it and is waiting for his meds to arrive in the mail. I told him I'd give him a few of mine if he wants to get started now but he's going to wait. I'm so excited for him.......I'll report back how he's doing once he's been on it a few weeks. He's only 40 years old and he's progressed rapidly over this part year. Last year he could still walk.....this year he's in a power chair. I wish I could have gotten him to try it sooner.

His wife and I were talking the other day and commenting on how many people just on our street have neurological ailments. My neighbor has Parkinson's, I have MS and he has ALS.

Curious 04-04-2009 03:36 PM

Kitty, we have some PD members on LDN.

SallyC 04-04-2009 06:44 PM

Kelly, I hope LDN helps to hold your friend's ALS back for a long while, but it will not stop it. I believe it did slow my friend's ALS, for 6 years, but alas he did pass away this year..he was only in his 40s..:(

ALS is not the same as MS, it's a muscle disease and deadly. But like you said, it cannot hurt and just may help him. I will pray every day, that it does..:hug:

mom2five 04-06-2009 07:06 PM

Rats! I lost my sense of taste. My tongue isn't numb, I don't think, LOL...but I definitely can't taste my food. I tried to eat a few peanut M&M's today, no taste...now THAT is tragic! :( Unless something is really salty, I can't taste it. Sugar - no taste...aaagh!

I guess it will be good for my waistline. :rolleyes:

I missed ONE pill over the weekend. Fell asleep watching a movie. It seems to take a few days to recover when I miss...has anyone else noticed that?

mom2five 04-07-2009 12:29 PM

I had my appointment with Dr. Sullivan today...:)

I told him about my loss of taste...he said that I am most likely low in magnesium and zinc...sooooo

I took a bunch of both. I will keep you posted.

marion06095 04-07-2009 01:11 PM

I lose my sense of taste now and then, as well as my sense of smell. I'll be interested in hearing how you get along. Thanks for the posts.


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